September 24, 2018: Communicating the Experience of Illness

I admit it. Writing from a personal experience of heart failure is far more challenging than I imagined. I’ve tried to understand why, especially when I’ve found relative ease in writing a continuing blog about cancer. I’ve had long discussions with my husband, mulling over the differences that do, perhaps, account for this struggle. Part of it is that cancer, although I had a slight brush with it, was never life-threatening in my case. Heart failure is an altogether different matter. Am I afraid to plumb the depths of what it means to me to be a heart failure patient? Perhaps, because there’s something in that diagnosis, “heart failure,” that defies my sense of myself and my longevity.

Yet I look normal. I walk around the city, ride the transit system to appointments and run errands, participate in a weekly dance group, a choir, and lead a writing group for cancer patients. I don’t look like someone with a heart problem. My defibrillator is hidden beneath my clothes, and only my husband sees me taking my daily regimen of medications for this condition. And yet, if I scan the internet for more research studies on heart failure and its prognosis, I turn away, feeling a flash of anxiety. I’ve already defied the average statistics on life expectancy in heart failure, now in my tenth year since my diagnosis. Yet I’ve struggled to find the words I want, the organizing idea that allows me to do more than merely report on the technical and medical aspects of my condition. Writing, which usually comes easily for me, has been a struggle in this domain that I didn’t expect.

Two weeks ago, my I wrote here about my search for metaphors to describe the experience of heart failure, optimistically having turned to my usual source of poetry and literature to find descriptions, imagery, and metaphors like those so prevalent in other illnesses. I hadn’t expected to find such scant listings of poems, novels or memoirs that referred to heart failure or disease, so I kept digging, starting with the ways I think about or refer to my heart.

It’s a workhorse, this heart of mine, and until my diagnosis in 2008, I didn’t give it much thought. It was reliable, uncomplaining, nearly silent, save for the times I’d check my pulse after exercising. Other of my bodily parts got more attention: an arthritic knee, occasional bladder infection, Achilles tendonitis, or the migraine-like headaches I’ve been prone to since having neurosurgery as a teenager. And despite treatment for DCIS (ductal carcinoma in situ) my health was good, my ailments relatively minor, particularly when I listened to cancer patients’ stories shared in my writing groups : their surgeries, chemotherapy, side-effects, and for some, terminal prognosis. I’d go home from those sessions many times with an “aching heart,” my common description of grief or sorrow. My heart was not literally hurting; but I was simply expressing my emotions in ways common to everyone. The heart, after all, has long been considered the “home of the soul, seat of love, place of wisdom and justice, and the symbol of our vitality.” (Carter, Our Human Hearts, 2006). John Stone, MD, a cardiologist and poet, has suggested we each have two hearts within us, the literal, blood pumping organ, and the metaphorical heart, the symbolic center for our emotions. (In the Country of Hearts, 1990).

Metaphors, many agree, are essential to our ability to describe and convey the experience of illness–not just for the patient, but for the physician as well. In a world where medicine is increasingly dominated by technological and pharmaceutical advances, we communicate our experience of illness through our metaphors. Since humans began communicating with one another, it has been through stories and the metaphors we use that we can make sense of our worlds. Even though our metaphors can sometimes be simplistic or misleading, it’s how we communicate our experience of our illness. And according to Benjamin Oldfield (Johns Hopkins) and David Jones (Harvard University), “because of the limited ability of the biomedical narrative to convey the meanings of disease and treatments, doctors and patients need to communicate through the rich possibilities of metaphor” and, I would add, their stories of the illness experience. (Perspectives in Biology and Medicine 57 (3): 424-442)2014),

In the article, Oldfield and Jones trace the heart’s metaphorical development in literature alongside the changing diagnostic and therapeutic landscape of heart disease, beginning with poetry and literature of the 19th century and tracing the progress and shifts in thinking about heart disease and use of metaphors to the present day. In each of the seven phases discussed, they present examples of literature: novels and their protagonists, the metaphors used which also reflect ongoing shifts in the way the heart disease is viewed and described. While cardiac science and medicine have evolved to give us a much more precise understanding of the heart and its dysfunction, the authors argue that the technical details do not do justice to the emotional meanings of cardiac disease and medicine, “and metaphor remains essential.”

Body my house

my horse my hound

what will I do

when you are fallen…

(From: “Question,” by May Sarton, In: Nature: Poems Old and New,1994)

Our metaphors are bound up in our narratives we use to describe how illness affects our lives. Their importance to the patient-doctor relationship is something that Rita Charon, MD, knows well. Charon is the executive director of the Narrative Medicine at Columbia and originated the discipline of narrative medicine. As described on the Columbia University site, narrative medicine advocates: The care of the sick unfolds in stories. The effective practice of healthcare requires the ability to recognize, absorb, interpret, and act on the stories and plights of others. Medicine practiced with narrative competence is a model for humane and effective medical practice. It addresses the need of patients and caregivers to voice their experience, to be heard and to be valued, and it acknowledges the power of narrative to change the way care is given and received.

The stories of our medical experience and of heart failure, the metaphors we use to describe them, are important and unique to each of us. Storytelling is medicine’s currency, according to Emily Silver, MD, writing in JAMA (October 2017, V 177, No. 10)). Patients describe their symptoms using narratives. “Doctor, my legs are so swollen that I can barely walk to the bus stop.” The physician translates his patient’s symptoms into medical language for her records and to communicate with other physicians: “This is a 53-year-old woman with heart failure and reduced ejection fraction.” But he comes to understand her illness–and his patient–through her stories and the metaphors she uses.

…In growing as a science, medicine has forgotten that it is an art, which like other arts must celebrate the creation of stories. Increasingly, the medical profession is looking to a literary cure. The past five years have seen an explosion of writing about illness by both physicians and patients who — like the Romantic poets during the Industrial Revolution — are trying to restore a sense of meaning and healing to counter the dehumanizing effects of technological explosion. (NYTimes, April 18, 2004)

As patients and individuals living with heart failure, we need to honor our stories and the metaphors we use to describe our experience. They are essential in the facilitating understanding, diagnoses and our care in our doctor-patient relationships. Your story and matter. We are our stories. Not only do we make sense of our lives through story and metaphor, but through them, we can better communicate the experiences of illness to our physicians, family members, and others with illnesses like our own. The metaphors we use, the stories we share from our experience of heart failure or any other illness, these are instrumental in creating understanding, in deepening our knowledge of the experience of living with or suffering from heart failure or any life threatening illness.

But in order to make you understand, to give you my life, I must tell you a story—and there are so many, and so many—stories of childhood, stories of school, love, marriage, and death…–Virginia Woolf

Writing Suggestions:Exploring your stories of and metaphors of heart failure

Write the story of the day you were first diagnosed with heart failure. Where were you? What were your symptoms? What concerns or fears did you have? Was it a surprise, a shock? What metaphors come to mind as you replay this memory?

How did you think about–or visualize/describe–your heart before you learned you had heart failure? How do you think about it now? What descriptive phrases or metaphors do you use to describe it? (A good way to get started on this exercise is to divide your paper into two columns: Before HF/After HF and simply jot down the words and metaphors that come to mind for 2 or 3 minutes. Read it over and then write the full narrative.

Does your physician take time to listen to your story of heart failure or its symptoms before discussing treatment or drugs? How did it make you feel?

The most important man in my life had heartfailure. He was an inspiration to all that he knew especially me.

The only way I understood his illness was medically. this is because I’m a Nurse that once worked on an open heart surgical floor in Boston, MA.

The way my Dad shared his illness was to talk to me about anything. He opened up a lot of his life. Somethings were very personal and will never be shared. Other talks were about work, and spiritual things.
He believed in the word of God. However he strggled with issues.

Wonder why he chose me out of six children to talk to. I inherited a love for God & studied His Word.

That brought us closer. Dad asked
questions. Although he never missed Sunday service. Dadwould ask me a question then look it up and read the words himself! It excited me to share
words.

He never complained & grateful for everything he had.
Please not he was a man . And not on a pedastale .

I was not allowed by my Mom to discuss Dad’s condition, or to his Dr. .
That was more or less how I grew up, Mom would stop conversations that were sensative. My Dad was sentamental & Mom would change the suject.
However, my Dad had a bucklist he said. One was teaching me cribbage,
My sons golfing & golf ball set & play with them.

Hospital visits became more often.
when at the hospital he did talk about
test procedures, etc.
I do not want to share more right now. Time to stop.
Millie
P.S. LIVING WITH
MBC.